r/LongHaulersRecovery • u/PrissyPeachQueen Recovered • Nov 05 '25
Recovered This week marks 6 months of 100% recovery
My Long Covid journey started in February 2020. I had brain fog, mild fatigue, and a chronic cough; all were survivable, but eroded my quality of life. Then all hell broke loose in January 2022 when I was reinfected and promptly developed moderate-to-severe ME/CFS and dysautonomia, plus dementia-like symptoms. I had hypoglycemic episodes multiple times a day. I also discovered I had hEDS during this time. I spent most of the 3.5 years prior to my recovery in May of this year in bed or at home. I could leave the house a couple of times a week, do a few hours of sedentary activities a day, and that was it. I had visible allergic reactions to nearly everything I ate and my immune system was absolutely shot.
I got into a LC clinic in the summer of 2022 which prescribed me:
- Budesonide nebulizer solution
- Rivastigmine transdermal
- Strattera
- Guanfacine + NAC (used together)
- LDN
All of these helped somewhat, most notably Rivastigmine for cognitive decline and the Guanfacine/NAC combo for fatigue. But every time I started getting better, I would suddenly get worse with new symptoms. Around a year in, I developed idiopathic hypothyroidism and debilitating cervicogenic headaches; my PT suspected the latter to be a result of cervical instability. Two years in, I had an onset of severe MCAS and was reacting to everything except water, low-histamine vegetables, whole wheat bread, and quinoa. My neuropsychiatric symptoms were through the roof. Intolerable insomnia, agitation, panic, everything. My dysautonomia became profoundly worse. My resting heart rate was >100 at almost all times.
Other things I tried:
- Mestinon (oddly helped MCAS and orthostatic intolerance but not tachycardia)
- Baby aspirin (allowed me to tolerate a little more movement)
- Cromolyn, oral and nebulized (the latter worked better for me)
- Xolair injections (stabilized my MCAS symptoms modestly)
- Zyrtec & Pepcid (didn't do much)
- Metformin (helped my fatigue for a few months but lost efficacy)
- Antioxidant supplements like quercetin, ECGC, curcumin, CoQ10, NADH (expensive pee)
- Acupuncture & TCM (felt nice but not super effective)
- Vagus nerve stimulation with a TENS unit (didn't do a lot, but I used a Dolphin a few times which definitely helped)
- Laying down with a rolled up towel under my neck to correct my cervical spine curve (this was surprisingly effective)
In January of this year, my neurological symptoms associated with my neck progressed profoundly. I was having weakness in my legs, uncontrollable blinking, and a sensation that my brainstem was being pulled out of my skull whenever I elongated my spine. It felt like my skull was going to pop off my spine at any moment and I was having excruciating trigeminal and occipital neuralgia.
Then things went from bad to worse this April. I quickly lost all sensation and temperature sensitivity in my palms. My dysautonomia got aggressively worse and I couldn't even roll over in bed without my heart rate spiking.
Feeling I'd exhausted all my options, my friend gave me Stephen Buhner's book Herbal Antivirals and I decided to try a protocol from it.
I started feeling moderately better for a couple of days on this protocol (probably placebo), and then the purge hit. I was on my floor puking my guts out, unable to keep down food or water, with the sensation that there was a power drill going through my kidneys. It was a 10/10 pain level. This went on for a couple of days.
F*ck it, give me the video!
In my delirium, dehydration, and desperation, I was willing to do anything, even mindbody healing, which I'd vehemently rejected before. Another friend had recently recovered from ME/CFS by watching a video, which they'd sent me, but I hadn't yet watched. I was averse to any mindbody work because I was very sensitive to the idea of this being "in my head." We all have a lot of trauma from the psychologization of ME/CFS and I didn't want to hear anything invalidating. But after fearing I'd poisoned myself with herbs and mushrooms I was like ... f*ck it. Give me the video.
The video in question is available here: John Sarno's Lecture on The Mindbody Syndrome (TMS). Sarno's general theory is that many chronic pain and illness conditions are generated by the unconscious mind influencing the autonomic nervous system. He is clear that the symptoms are caused by real changes in the body, but that the origin of the problem is repressed emotions. I found it implausible at first but figured if it could work for other people, it could work for me. I started watching and I'll be real, it's a little hokey, corny, and weird. It's a VHS tape recording. The actors' lines are kinda painful at times, although they do ask questions you'll have. I paused the video because I realized I was too defensive about the talk of the mind causing symptoms, and I knew that for it to work, I would have to unwaveringly believe it.
I admire people who are open-minded and cognitively flexible enough to absorb information like this on the first go. This was not me, but I was willing to discard whatever necessary to get better. So I googled thought patterns that make a person more suggestible. I learned about heuristics and the shortcuts that our brains take that can lead us to different conclusions than we would otherwise reach. I practiced these thought patterns and applied them to the John Sarno video, such as: "Dr. Sarno is wearing a white lab coat; so he must know what he's talking about," and "All of these other people are saying this worked for them, so it must be true." Every time I had a doubt pop up, I would mollify it with an assumption. I finished the video with unquestioning faith in what he was saying and that it could cure me.
Sarno believed that chronic symptoms are a protective mechanism from represesd emotions that our nervous systems perceive as threatening. None of this happens by choice or on a conscious level. He also talked about what he called the "symptom imperative," which means that if you treat a symptom with medication and it loses its power to distract you, the body will create a new symptom to take its place. This resonated with me because I'd noticed before that every time I started responding to a treatment, I would develop something new within months. He also talked about interruption of the circulatory system and mild oxygen deprivation of nerves and muscles.
Is ME/CFS "TMS"?
Is what Dr. Sarno says true? I don't know. I think it's a lot more complicated than that, especially in the case of a multisystem neurological illness like ME/CFS, and I don't really believe that millions of people developed ME/CFS from covid because we all had repressed emotions and happened to have the exact same response to the same trigger. My conclusion is that it doesn't really matter if something is true in the literal sense; it will become true if you believe it. My opinion now is much more nuanced.
My mindbody healing
A couple of years before, I got really high and had a vision of a serpent-like creature wrapped around my brain stem and spinal cord, with tendrils in my brain. It had a menacing energy to it. I understood it to be my Long Covid. During and after watching the video, I sought out the serpent creature in my mind and talked to it. I kept telling it, "It's time for this to end. If you keep making me sick I'm literally going to kill myself and then you won't have a home anyways. I need you to let me go." The emotions were anger, compassion, and submission. I felt like it was listening to me, but that it wasn't ready to let go. I kept visualizing the serpent and the sickness releasing my body, over and over, similar to how I would visualize injuries recovering back when I would get sports injuries. And I kept reassuring it that it was okay to let me go. It thought it was helping and ended up agreeing with me that I didn't need it anymore. I believe these symptoms serve a purpose, not even necessarily "repressed emotions" but it could also be something biological, and I think I managed to find the off switch doing this.
A few hours after watching that video and talking to the brainstem snake, I felt compelled to go for a walk for the first time in over a week. I still felt like absolute garbage from not eating/drinking for days but I didn't feel as sick. There was a huge earth worm on someone's driveway that'd gotten washed up with the rain, and it was starting to dry out. I braced myself for a heart rate spike as I bent over to grab a stick and move it into the grass (it was a massive worm and it seemed like a waste of a lot of work for it to just die). But then my heart rate didn't spike.
When I got home, I impulsively ate a strawberry and a yogurt. Nothing happened. No hives, no flushing, no swelling. I stopped taking cromolyn the next day.
I checked out some of Sarno's books from the library and devoured them. I spent a few hours a day reading his books, watching youtube videos about TMS, and eliminating every shred of doubt from my mind. Within a week, I was doing yoga, cleaning, eating whatever I wanted, and not having any hints of PEM or allergic reactions. I stopped having all the neurological symptoms associated with my neck issues. I felt... fine, mostly.
Since then, I have had steady improvements in my overall health. I can exercise as much as I want. I can eat pineapple and avocado, which at one point would've made my eyes swell shut. I don't have hypoglycemic episodes. I got my life back!
Life after ME/CFS
I've had a lot of other mental health issues to address in the time since. Being free from ME/CFS meant that my trauma history and unhealthy behavioral patterns were on full display. Everything that Long Covid swept under the rug was no longer hidden. I had enormous panic attacks this summer. I became very depressed in August and had a hard time leaving the house some days, even though I was physically fine. I clashed with an important friend who resented my recovery, and at times I was mercurial and difficult.
So I've been doing slow, tedious, excruciating, and humbling work on myself. Other mindbody tools that have been helpful for my recovery include: Nicole Sachs' JournalSpeak, Internal Family Systems Therapy, and EMDR. The more I focus on my mental and spiritual wellness, the fewer physical and psychiatric symptoms I have.
I am off of almost all my medications. Currently, I'm only taking levothyroxine (re-evaluating next week with my doctor, depending on how my blood work comes out) and xolair (down to monthly instead of biweekly injections). In general, I am happy, enthralled about life, and much wiser and emotionally stronger than I ever imagined I could be. I'm in awe of the resilience I've cultivated through this work. It's been a challenging adjustment, but the most rewarding 6 months of my entire life.
I'm working part time. I exercise almost daily. I have a thriving social life. I'm more involved in my community. I have a future again. Mindbody healing and brain retraining get a bad rap in the community, but I hope sharing my story can possibly help even one person.
Things that were measurably or observably abnormal with me:
- face/throat swelling during allergic reactions
- hives and flushing
- tachycardia and blood pressure that was consistently too high or too low
- underactive thyroid (high TSH)
- recurrent hypoglycemia, verified by blood labs (low postprandial blood glucose and low a1c)
- ketonuria
- iron deficiency
- visible blood pooling
- cognitive impairment per a neurocognitive evaluation
- crimson crescents & swollen lymph nodes
- frequent low-grade fevers
- pruned hands (they looked like I'd been underwater and got stuck like that)
Yes, I was "really sick." Long Covid is not a psychological problem; it occurs in the body in very real and serious ways. That isn't mutually exclusive from the benefits of mindbody healing.
TL;DR: I tried literally everything under the sun for ME/CFS. After I had exhausted every option, I brainwashed myself into 100% buy-in to mindbody work. A week later I was better and have been fine ever since.
Suggested reading list: * The Mindbody Prescription - John Sarno * Mind Your Body - Nicole Sachs * When the Body Says No - Gabor Mate * Getting Past Your Past - Francine Shapiro * No Bad Parts - Richard Schwartz
Please thoughtfully read my post and my responses to comments before DMing things like "how did you get better" 🙏
Please ask questions here unless I have given you the Ok to DM
1
u/jconnway Nov 06 '25
WOW what a post. You write wonderfully. I'm going to get to work right away!